Monday, July 8, 2013

Processing the Diagnosis the WRONG Way

It bugs me when I hear special needs parents criticizing another special needs parent for the way in which he/she received the diagnosis of his/her child. I'm speaking specifically of a Down syndrome diagnosis, since that is the sector of special needs parenting to which I am a part of.

I've heard stuff like:

"I can't believe she said all those horrible things she was thinking when she heard about her son's extra chromosome! She grieved TOO MUCH and was just so extremely selfish about it! It's going to give the world an even more negative view of Down syndrome than it already has!"


"She didn't grieve AT ALL when the doctor said her new baby would always be different??? WHAT IS WRONG WITH HER? Clearly she is lying and is putting on a show for us all. I bet she cries herself to sleep every night when no one is watching."


"She only grieved for ONE DAY and then she was just....over it? That makes no sense to me? Clearly she is fabricating some sort of story simply for a dramatic blog post. Because obviously that can't be what REALLY happened."

My story definitely falls into the first category of grieving "too much"- according to some standards. The amnio results were such a surprise, and this was so far outside of my plans that it took me a long time to move past the initial shock, fear, and horror of what I thought this meant.

But the entire experience of receiving her diagnosis was so painful, so extremely personal, and took everything I had to survive it one day at a time that the thought of someone criticizing "how" I grieved through the news makes me want to punch someone in the face. And trust me, I am not a "punching in the face" kind of person.

If you really think about it, special needs parents are all completely different. The ONLY thing that they have in common? This diagnosis. Because even their children with the diagnosis are different. The ONLY common thread is that tiny bit of news that sets the whole "special needs parenting" train into motion. We're talking different religions, different backgrounds, different lifestyles, different preferences, different outlooks on the good and the bad, different choices in just about everything. So why would we think that all of these different people would suddenly join forces and respond the EXACT SAME WAY to this life changing bit of news?

For someone to insist that there is only one correct way to receive this news is for them to snidely suggest that their experience and response is somehow superior to everyone else's. When in all reality? It is just another special needs parent's story.

We are all different. We all have different stories. And each and every story is no less real and right.

No doubt your story is entirely different than mine. Hold tight to that- because it is yours and no one can make you feel lesser or wrong because of a difference in opinion and response. Ummmm, isn't that what we're fighting for for our children? Difference=not a bad thing?

The important thing is that we somehow arrive at a place where we can love and nurture our children.

Whether this means "grieving the child we thought we would have so that we can celebrate the one that we DID have" or saying that "the child that we got WAS the one that we were meant to have" or simply not seeing a negative in it the end of the day it doesn't matter.

We all have a story. We all have a voice. And it bugs me when I hear of a special needs parent elevating their voice in a chance to put down another special needs parent's story. It makes no sense to me.

No one can claim to be the parental expert on Down syndrome because no one is the parent to every single unique individual possessing the extra chromosome. We are all simply experts on our own children- extra chromosome or not- because we are the ones who know them and fight for them the best. And no two children with Down syndrome are the same- just as no two children without Down syndrome are the same. Along those same lines- I would venture to say that no two journeys to becoming and accepting the responsibilities of a special parent are the same.

That's something that I truly love about the blogging world. It gives a chance for many unique voices to contribute a wide variety of experiences with children with special needs and in doing so give a broader picture of this special needs journey for all of us. Special needs parenting is not about a solo event where ONE singer performs to represent the whole, no matter how beautiful that voice may be. Special needs parenting is a choir made up of individuals as different from each other as the unique children that they are raising their voices for. The world needs to hear that choir. Not just the strongest individual voices that seem to have it all together.

This blog is my safe space, and I have shared my story and singular voice along the way these past three and a half years. I have always appreciated how respectful and encouraging all of you have been- even if your story has been different than mine. No one can judge the way we feel about a certain situation. And no one can judge the way we work through those feelings to arrive at a better place in parenting.

So to all of you- thank you. Your support has meant the world to me. I hope that I can provide that same sort of support and respect to those who need it as badly as I did/do.

If you find yourself grieving over a diagnosis. I want you to know that it is OK. I respect your process of getting from there to here, and I don't think that anyone should tell you how that should specifically look. If you find yourself with a new diagnosis and with no grief at all? I want you to know that it is OK too. I respect your process and journey, and I don't think that anyone can tell you how that should specifically look.

Let's focus on the important part of this all. The love and joy that can come from parenting a child- any child- when we can finally get to the place of accepting that child for exactly who he/she is as opposed to who we think that child should be. The process of getting there really doesn't matter.

Embrace your journey. You are the only one who gets to travel it, so enjoy the ride.

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